Tuesday, November 4, 2008

As parents of children with disabilities we face so much adversity. The average person has no idea what we face on a daily basis. I won't go into it- I have before and you all know how I feel about this.

Amendment 51 failed tonight. This was a punch in the gut. I should have put out more signs, I should have stood on street corners and waved (when I mentioned my remorse to Brian about this he said parents like us can't do things like that because we all have to be at home with our kids to give them their next g-tube feed...)

51 represented so much to us...not only would it provide relief for families and opportunities for children and adults with disabilities but it signified to us that people cared. It represented that we were worth it. It meant that the the average $50/year it would cost the average taxpayer was worth it.

Tonight I feel like people not only "don't get it" but they don't care.

I hope I am wrong.

I hope it was ignorance, not apathy, that interfered with the passing of this amendment.

It just makes me so sad.

I guess now all we can do is pick up our tails, put our heads together and think of how we can help the over 12,000 people in this state who not only facing the physical and emotional challenges of coping with a disability but now will continue to face huge financial burdens each and every day.

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On a completely different note it is an honor raise a child in an era that has not given into fear, but to hope. Looking forward to change....

9 comments:

That's make me very sad too Jen. People just don't get it. People don't get that their lives could be turned upside down in the blink of an eye and they too could be faced with catastrophic medical expenses that affect their very livelihood. It's very, very difficult not to become bitter and angry at the ignorance of people. But, it will just eat you up and suck all your energy.

You worked hard for what you believed in and you've got to know that someday it will make a difference. In the meantime, I'm with you . . . what a privilege it is to parent our very special children.

Jen and Brian, I am so sorry. It wasn't you. You did what you could. I am sad too. I am sad for the families that will suffer. I know it feels like no one cares for these kids. Know that those who matter do care and do get it. One day maybe the rest will catch up.

I agree with Ann. People just don't realize that we didn't choose this life of taking care of special kids. It fell upon us and it can do the same to them. Unfortunately it is part of the human condition to not be concerned about an issue until it smacks us in the face.

Please know that you made a HUGE difference in getting the word out about 51. At times I thought you might have been doing too much and I worried about you burning out.

And Brian is right, when you have kids like ours and no nurses and no funding for nursing care, you would have to be super human to do any more than you did. :)

Jen-(and Brian too)I just had to comment!!! As a fellow Coloradian, I am appalled that 51, as well as our counties school budgets, did not pass. ITS 2 CENTS!!In my true,gut feelings I believe people are allowing the poor economy to govern any tax increases- they all failed in Colorado! I know that the majority of us don't understand the unbelievable day to day issues you very special families have, however you are so profound in writing- I feel like I understand a little more every day. I also admire and respect you all more than you'll ever know-please know that you are not alone! And seriously, in your spare time-HEHEHE-write a letter to all the local news stations, newspapers- sent them your blog entry- it will touch people's core- it has mine!!Keep it up my friend!!Erin(St joes)

I've been reading your blog for quit some time now, but have only posted in the last few weeks.I want to tell you how sorry I am that the bill didn't pass for you. That must have been very frustrating for you and your husband.

I know I don't "know" you but after reading your entire blog I want to tell you that both you and your husband are wonderful parents and should be so proud of your little girl.

Please go to my blog...there is a little gift on my page for you and for Faith!

On February 4th, 2007 our little butterfly Faith Edona came into the world 15 weeks premature. At 25 weeks gestation she weighed 1 pound 6 ounces. This blog chronicles the ups and downs of life with a medically fragile child.